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Finally Diagnosed!

JesikaBeth

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JesikaBeth Contributor
JesikaBeth
Posted

Hello Everyone. Wow, so apparently I am back. I've been on and off this forum for years. Unable to get a diagnosis for quite some time.  A bit of a backstory:

 

Diagnosed with, at the very least, gluten sensitivity via bloodwork.  Told by my doctor that I could still eat gluten. Remained gluten free for a year, but then went back to eating gluten (and justified it by essentially given persmission to choose to eat gluten or not.)

 

Fast forward about 4 years.  Horrible GI problems and some other symptoms (Increasing problems with fibromyalgia and thyroid issues, a lot of pain, etc.). Went in for an endoscopy, and ended up being diagnosed with Cancer! They also took a biopsy for Celiac which came back inconclusive. Bloodwork, again positive for antibodies.

 

Again, fast forward about six months - which brings us to the present. Through chemo, things started to decline greatly (fibromyalgia with a vengance, hashimotos not being controlled, etc.) 

 

I am currently on a break from chemo, and decided to properly address my pain issues, because well now I have the focus and energy.  I went to the doctor last week, he reviewed my tests and confirmed that I do indeed need to be gluten free (he is also tweaking my thryoid med and putting me on a new fibromyalgia med.)

 

So here I am...

 

I'm on day 4 of being gluten free and so far so good.  Admittedly so, feeling a bit overwhelmed...  but I'm back, this time for good. 

 

Looking forward to, and hopeful for, finally feeling better :P

 

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ravenwoodglass Mentor
ravenwoodglass
Posted

Gosh you have been going through so much. I am glad to hear that you are back to being gluten free. There are no tests for gluten sensitivity so if you had positive bloodwork you are celiac. Some of us have seen great resolution of fibro symptoms gluten free so hopefully you will also. Sending good thoughts your way for everything to get much better for you soon.

GF Lover Rising Star
GF Lover
Posted

Keep that PMA...Positive Mental Attitude  :D

 

Colleen

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

Hello, thanks for the replies! I am hopeful for a gluten free lifestyle. I thought I'd be feeling angry, but actually I'm feeling relieved.  Nice to 'meet' you both :)

Gemini Experienced
Gemini
Posted

JesikaBeth.......looking at your signature list of all your health problems, almost every one is a screaming symptom of Celiac. The fact that a doctor told you you could keep eating gluten with positive bloodwork is what should make you angry, not the gluten free diet.  The cancer you were diagnosed with is strongly associated with undiagnosed Celiac.

But you know now that you have Celiac so keep eating strictly gluten free and watch yourself get better!  I also have Hashi's thyroid disease so watch as you heal for symptoms of hyperthyroid because once your GI tract heals, the level of medication you are on may be too much.  That happened to me and I didn't sleep for a week.  :ph34r:   But it was at the 4 year mark so it won't happen (if it happens at all) right away.

 

Best of luck to you and keep up the good fight!  Let us know if you have any cravings for food you miss because there are a lot of foodie experts on here that can help out. 

Feeling deprived is not something that should happen.  :D 

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

JesikaBeth.......looking at your signature list of all your health problems, almost every one is a screaming symptom of Celiac. The fact that a doctor told you you could keep eating gluten with positive bloodwork is what should make you angry, not the gluten free diet.  The cancer you were diagnosed with is strongly associated with undiagnosed Celiac.

But you know now that you have Celiac so keep eating strictly gluten free and watch yourself get better!  I also have Hashi's thyroid disease so watch as you heal for symptoms of hyperthyroid because once your GI tract heals, the level of medication you are on may be too much.  That happened to me and I didn't sleep for a week.  :ph34r:   But it was at the 4 year mark so it won't happen (if it happens at all) right away.

 

Best of luck to you and keep up the good fight!  Let us know if you have any cravings for food you miss because there are a lot of foodie experts on here that can help out. 

Feeling deprived is not something that should happen.  :D

Thank you, Gemini! I am feeling better, and yes I am angry at that doctor.  I am in the process of trying to get my bloodwork results back. So my question is - I can still be Celiac even with a negative biopsy? I thought that biopsies were the confirmation of Celiac, and not the bloodwork?

nvsmom Community Regular
nvsmom
Posted

Gemini is spot on. Those symptoms link back to celiac disease. I would be willing to bet money that you've had it for quite some time.

 

It is not uncommon for celiacs to have a negative biopsy. The last stat I saw was that the biopsy misses 1 in every 5 celiacs - that's a large amount considering doctors put so much stock in the biopsy, "gold standard" and all.   :rolleyes:  If you have positive tests, symptoms, and your health improves on the gluten-free diet, then you have celiac disease. And your symptoms really do scream celiac disease.  Do a search in the forum and you'll see a bunch of posts by other people with the same issues.

 

I hope you are feeling well soon.!

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Gemini Experienced
Gemini
Posted

Nvsmom beat me to the punch and she gave her usual excellent advice! With all of those associated conditions and especially the lymphoma, you must stay strictly gluten-free because it will help to make you better and calm your immune system down. Do not be overwhelmed. It is new, at first, but you will discover just how much you can eat. Not everyone gets the pleasure of knowing what caused all their medical problems and has the ability to do something about it with diet. You will find that eating gluten-free is small potatoes compared to having chemo.

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

Thanks, Everyone! To be honest I am starting to see the 'symptoms' of other diagnoses calm down a great deal. To the point it's shocking! I feel very, very hopeful and optimistic.  AND to be honest I feel better than I have in years, and I'm only just over a week in!

icelandgirl Proficient
icelandgirl
Posted

I'm sorry that you've been through so much...it's shocking to see how many celiacs have had to deal with so much pain and frustration for so long before diagnosis.

I love your positive attitude though...that will really help you and it's so nice to see it especially when I'm feeling down.

Gemini Experienced
Gemini
Posted

Thanks, Everyone! To be honest I am starting to see the 'symptoms' of other diagnoses calm down a great deal. To the point it's shocking! I feel very, very hopeful and optimistic.  AND to be honest I feel better than I have in years, and I'm only just over a week in!

Amazing, isn't it? It just keeps getting better.

BlessedMommy Rising Star
BlessedMommy
Posted

I'm glad that things have finally gotten sorted out for you! :)

 

I hope for a day where doctors will diagnose based on bloodwork and not use the results of a negative or inconclusive biopsy to override positive bloodwork. 

 

I'm glad that you're feeling so much better! You will keep on improving! This is a great board to learn how to be gluten-free, I've learned so much from this board!  :)

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